hello,
My son was diagnosed with duane's syndrome(a rare disorder that affects eye movement). I first noticed this when he was about 3 mo old ,but I figured it was because he was still so young and hadn't developed his coordination yet. He is 6 mo now and I just know somthing isn't right. One of his eyes (his right eye)is just all over the place and it's a little bigger then the left, everyone(family) keeps reasuring me that this is perfectly normal and he will grow out of it. He is 8mo now and I talk to his pediatriton about it, I would have taken him sooner but we had recently moved. His doctor referres him to see a pediactric strabismus doctor. He is 9 mo now and the pediatric strabismus doctor diagnosis him on the first visit with DS and actually I was wrong, I thought his bad eye was the right one when it was actually the left one. The right eye was not wondering all over the place his left eye just was not moving, it had limited movement. He could not look to the left with his left eye but the right one looks to the left just fine. My poor baby has to turn his whole head to look to the left he can't just look with his eyes or all he'll see is his nose. I'm just not sure how he sees me though, I've looked up duane's syndrome and it says that most people with DS develop a head tilt to get binoculer vision because when the are looking strait ahead they see double. He looks perfectly normal you can bareley even notice it unless he looks to quickly to his left. He is one handsome little guy let me tell you
I would like to hear from other people who have DS and how it affects you
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I don't have DS, nor does anyone I know. I just couldn't resist telling you what a CUTIE he is!
Hello,
My name is Michelle and I too have a baby son who has been diagnosed with DS. Exactly the same as you describe. We too thought it was his right eye that was erractic but now know that the left eye has limited movement. I have had two Specialist's come to the same diagnosis, and we are quiet certain that Jack has no other problems that can be associated. We have been told that his will probably have surgery when he is 4 to straighten the eyes, and therefore fix any head tilt. Of course the problem itself will still be there. I know it is no big deal compared to what some children get dealt in life, but it doesn't stop me worrying particularly about his future and any problems he might encounter later in life. I am interested to know how you are getting on and have you been given any information different to me.
Regards
Michelle
Hi,
My name is Sam and I am 18. I have Duane Syndrome and I had eye surgery when I was in 2nd grade. Your son pretty much looks and sounds like my situation. As you have probably seen there are much worse cases of it when the eyes wont line up at all. He will be perfectly fine. :) I do have a head tilt, I have neck pain but I have gone to physical therapy and learned how to deal with it. One piece of advice I have for you is if a doctor recommends surgery to really research it because I had the surgery and about a year later everything went back to the way it was. And there are obviously risks of something going wrong and he could go blind in the eye because of the surgery.
I hope that helps :)
If you have any questions for me let me know
Samantha
I am 21 and have Duane's Syndrome in both of my eyes. I have a head tilt, but no 3D vision...but I also have esotropia and muscles in my eyes that were not connected right on top of it. The weak eye is always smaller than the strong eye. It tends to squint, and in the sun, one eye may remain closed, the weaker one.
Goodluck! I have had 2 surgeries, one when I was 5 months old and another when I was 8. It was not too bad. :o)
My grandson Carson who is 13 months old was diagnosed last month with DS. I have been searching the internet ever since to find information on this. It is worrisome that it is referred to as a "syndrome". So far he is devloping normally. I just worry about his future. Your son is a cutie. They are so precious.
YOUR BABY IS BEAUTIFUL!
xox
Hi Chrissy,
My grandchildren are getting so big. The twins Tory or Tony are 4 now. I posted some pics.
Have a good weekend. Debbie
Our now 19 mos old baby girl was diagnosed with DS when she was 6 mos, she has DS in her left eye...so far she is doing great she does have little head tilt but otherwise she is healthy little girl... Her doctor at John Hopkins said at this point she doesn't need any surgery..she is going back in 6 mos for follow up...hopefully I would have good news to share with you all.
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